A Super Fun Time With My Doctor

I went to my doctor yesterday. You remember the guy: poor bedside manner, condescending, doesn’t think “people with Crohn’s disease should be runners.”

He’s so great.

So great, in fact, that I took a little visit to see him yesterday.

Here’s how the visit went…

Doctor: Hey there. How ya doin?

Ali: I’m good.

Doctor: You don’t usually come see me when you’re “good.”

Ali: Haha, good call. I don’t feel so hot. I think I’m having a flare. I ran my marathon, though!

Doctor: Yeah? What was your time? Like 4 hours?

Ali: 4:13.

Gratuitous marathon photo.

Doctor: Nice. OK, so remind me of your case. When were you diagnosed?

Ali in head: Seriously? This guy couldn’t take two minutes to read my chart before I came in? And haven’t I been seeing him for four years now?

Ali out loud: I was diagnosed when I was 7.

Doctor: OK, and why was that your diagnosis?

Ali: Well my pediatric GI did an endoscopy, and my dad passed out while it was happening, which was kind of funny, because he tried really hard not to pass out but he just couldn’t help it…so she did that test, and I had a CT scan, and they said I had Crohn’s. That’s really all I remember because I was so young.

Doctor: Do you have your pediatric GI records?

Ali: Not on me, no. I’m sure I can get them though, or I can give you the number for my pediatric doctor and her office can fax them over.

Doctor: So you don’t have them on you?

Ali: Um, no…I do not have the results from the endoscopy I had done when I was 7 years old currently in my purse. I’m sorry.

Doctor: OK. Well, I actually don’t think you have Crohn’s disease.

Ali:[Blank stare]

Doctor: When I did your colonoscopy [note: this was in April 2008] I actually didn’t see signs of Crohn’s disease. To me it looked like a bad case of ulcerative colitis.

Ali: Um, OK. That’s brand-new information. Why didn’t you tell me that at the time, or in the three years since then? And why have you been treating me for Crohn’s if you don’t even think I have it?

Doctor: Because you told me you were diagnosed with Crohn’s.

Ali: I’m glad you trust my opinion over your own. [Nervous laugh.]

The rest of the appointment involved me asking a ton of questions about how exactly the diseases are different, whether he would have treated me any differently for Crohn’s versus colitis, plus me repeatedly asking him why the F he never spoke up, especially since I have been in so many times since that colonoscopy.

Colonoscopies are sexy. Trust me. Super good time.

So the doctor gave me Steroids, and took lots of blood to ensure that this is, in fact, a Crohn’s flare.

Er…colitis flare?

I’m confused. Clearly.

The doctor wants to prescribe me two additional types of medications — pills I would have to take daily, and lots of them (8+ per day). I said I don’t want to be on that many different kinds of drugs, especially not “indefinitely.” He also wants to up the dosage and frequency of my Remicade treatments.

And he wants me to come in for another colonoscopy ASAP.

I’m sure this doctor is a smart guy. And I don’t think he’s a bad man. But I also don’t think I’ll be seeing him again. I’m ready to finally seek out a second opinion and find a doctor who understands me. I don’t care what my eventual diagnosis is, but I’m totally confused right now.

Yesterday certainly wasn’t all bad, though: The Sweat shirts arrived!

NO, there are not additional shirts for sale. These are shirts that were already ordered, and last night my favorite JackRabbit employee and I addressed envelopes, stuffed envelopes and sealed them up with sweaty love.

Setting up shop at JackRabbit. Look at the pretty colors!

I woke up this morning with some rough pain, so I took a sick day…again.

I am still in my pajamas. I am not going running. And I have good company/a nice boy taking care of me, because Crohn’s is not contagious, and neither is colitis. Or whatever I have.

I am smiling because I'm wearing Halloween pajama pants.

Now back to watching “Modern Family.” Sick days aren’t all bad.

And someday soon I will start posting about running again. I promise. Running is cooler than Crohn’s…

seriously, is your doctor paying attention or what?!? i mean it sounds like he’s just trying to get through the day, way to build relationships doc! I would have flipped out if my doc had pulled this on me. I have UC, it sucks, and I need a doc on my side to help me control it. This doc sounds confused or out of touch, anyway, there are plenty of docs out there, I say second opinion for sure!

You need a new doctor! If you want a great, young, active, female GI at cornell email me for a rec – as a long time colitis-haver fed up with an old man doctor, I can promise you’ll be so much happier if you switch.

Oh my goodness! Get a second opinion..asap! I’m not a doctor, but that just doesn’t sound right…no doctor should trust a patient’s opinion over his own (medically trained self) for three years! And feel better :).

Good for you! I always tend to freeze up in doctors’ offices and not ask the questions I want to ask or stand up for myself, in this kind of case and am kind of confused at the end. I’m sure having been diagnosed at 7, you’re quite used to doctors and it sounds like you handled it well! Someone who understands is so important, hope you find a good match soon!

Oh girl, get a different doctor. I have had good and bad, and definitely feel less stress when I have a good one. My crohn’s doctor that I have now even calls me personally to see if my meds are working!

That doctor sounds awful! How could he not speak up if he didn’t think you have Crohns? I hope you find someone who can help you and with whom you feel comfortable. Sorry to hear you aren’t feeling well.

Ali. I have UC. I live in NYC. There are WAY better, more understanding docs out there that won’t just leave you on remicade. This guy sounds like a douchetool. You deserve someone better. I know it may be out of your insurance reach, but I recommend the Beth Israel Center for Wellness (it’s a Dr Weill center.) http://www.healthandhealingny.org/

Oh Ali! Stay positive! Please, please, please go see another doctor. And another one after that if you need to. There is nothing more important than your health and you deserve a doctor that listens to you and works with you to find the best treatment method and understands your case and your personal treatment preferences and lifestyle choices and how they all fit together to get and keep you healthy. I am floored by your doctor and had two run ins with similar doctors-just not ok!!!
Both Crohns and colitis are icky nasty sluts that need to be destroyed.

Doctors. Don’t they just make you sick sometimes!?! Hey . . .wait . . . is that how . . .well, you get the drift. Anyway, I am new to you’re blog but have enjoyed your post marathon joy. I hope that you are able to get a correct diagnosis soon and back to running and sweating and running and sweating!

Crohn’s or ulcerative colitis – it’s just no fun! I was diagnosed with Crohn’s two years ago and I’m still figuring it all out too. Getting a doctor that you trust and takes you seriously is a must though. Go with your gut! (no pun intended :-D)

Good for you for deciding to get a second opinion. This doc sounds lazy and a bit uncaring. I hope you find a wonderful new doc who treats you right and understands what is going on. Wish I could recommend someone but I am still searching for a general practioner myself! Let me know if u find someone good in NYC!!

Yeah…I am no doctor…but I DEFINITELY would go to a different doctor. How can he think you were misdiagnosed and not say anything? And then randomly wants to put you on all these other meds? Yuck…good luck in your quest for a new DR and feel better!

What the hell?! It is irresponsible of your doctor to not tell you the results of something that you had done three years ago. So not cool. I’m happy to hear that you’re going to get a second opinion and I hope you feel better soon!

I think it is extreemy wise of you to get a second opinion! Something seems quite off about this doctor since he decided to believe your opinion rather then what he thought. (not hat you arent smarter then A doctor or anything!

Your case sounds so similar to mine! But my doc didn’t tell me I have UC now, I have “indeterminant colitis” where it looks like Crohn’s (as i have it outside of my large intestine) but acts like UC. But my treatment never changed after my original diagnosis. I still say I have Crohn’s. Sometimes I say I have both. But my doctor totally supports my running, so its definitely time to move on.

This is why I hate doctors. UGH. I can’t believe he never said a word to you about this in three years — and never requested your original childhood results when you first went to him! Absurd and unacceptable. Call the specialist I sent you the info for!

you should post his name, so no one will use him or go to him – public service! I would also call his insurance provider and just tell them about the whole situation…….I bet they get involved pretty quickly at even a hint of malpractice……

Im sorry :/sorry. I got frustrated when I read this that’s so annoying…im sure a second doctor will be able to give you a better idea of what’s going on…and if not – keep looking untilat you find one-they didn’t go to school for a hundred years to guess and make stuff up!

Keep your positive outlook on the situation. I totally understand wanting to lose it though! Congrats for going after a 2nd opinion. Obviously it’s time to cut ties with this doc and go to someone else that actually will take the time to get to know you, educate you about your situation and act like an actual doctor, i.e. someone who cares for the health and well being of their patient.

Ugh, so terrible to hear that about your doctor! Good call on getting a second opinion and I hope you start feeling better soon.

I’m posting because I thought it might make you smile to know I saw a girl rocking the Chicago Marathon on Sunday in one of your Sweat shirts. I yelled “I love sweat too!” and she turned around and smiled at me. So happy everyone loves sweat

IF IT TURNS OUT YOU HAVE COLITIS, I WANT MY CROHN’S DONATION MONIES BACK!!!
(just kidding. of course.)

I’ve had that happen with my hematologist before, where he’s treated me like a brand new patient when I’ve gone to see him even though I’ve seen him before. At one of my last visits, he told me that I could go ahead and go off of my medication. I said, “Really? With my history of multiple blood clots?” And he acted surprised and asked why I didn’t tell him about them… and then consulted my chart and realized I had. I don’t expect doctors to remember every detail of every visit by any means – but that was weird. Go with your gut and get a new doctor.

Hahaha no joke, yesterday I flipped out after the appointment because I was all, “I JUST RAISED MONEY FOR CROHN’S!” Turns out, still good: Crohn’s & COLITIS Foundation. But fine. I’ll refund you. Dang it.

Oooh seeing the sweat shirts makes me excited!! I can finally see what the coral looks like I hope mine is in that group!

That doctor is a little messed up, or a lot messed up actually. I have had similar experiences with doctors. Sometimes I think their egos get in the way and they take things out on us when in fact they should be explaining and informing us of what is going on. I can’t believe that he didn’t tell you what his diagnosis was THREE YEARS AGO. You definitely should find a new doctor.

Just keep your head up and know that there are a lot of people thinking about you, even if we don’t really “know” you.

I think Halloween pajama pajama pants are sexy! You are so adorable
I am sorry you are so sick right now and I hope you find a doctor who understands you and your condition, or that this one gets you on the right plan for treatment. Lots of positive thoughts your way!

Ugh. This is my greatest fear. That one day I’ll go for a colonoscopy and be told I actually have Crohn’s. When I was diagnosed, they originally thought Crohn’s because I have absorption issues with vitamin B12, and apparently that’s common with Crohn’s but not colitis. Anyway. Greatest fear.

I’m sorry you’re dealing with this and hope you find a doctor who really listens to you – and has better bedside manner – very soon! I’m thinking of you, Ali.

I think getting a second opinion is a great idea! This guy sounds … no good. Sure, maybe he’s smart and all that, but it doesn’t matter how smart he is if 1) he doesn’t share all of his smarts with you (not sharing that he thought you had colitis) and 2) if he can’t explain him smart thoughts and you leave his office confused. Hopefully you find another doc who is smart, nice AND patient enough to explain important things clearly. ALL doctors should be all of those things! It’s sad that they aren’t. (And by the way I work in healthcare PR.)

Oh my gosh…I think I’d be either in tears or wanting to punch my doctor if he told me that! I’m so sorry, Ali. I totally understand why you wouldn’t want to see that doctor again. Clearly he isn’t the best at communicating with his patients or the most diligent when it comes to diagnosis and treatment. There’s got to be much better doctors in NYC for you!
I’m glad to hear you’re being your usual self and looking at the up sides of a sick day — Modern Family is an awesome way to cheer up
I’m thinking of you and hope you get your questions answered very soon!

I have an amazing general practitioner docter, and an AMAZING gynecologist here in NYC. I have a god-awful dentist, though, and that’s made me change dentists no less than FOUR TIMES in the last four years (I don’t have the best teeth). However, a really good fit with your doctor is so incredibly important and makes all the difference in the world, so keep hunting til you find the right doctor! Don’t give up – sending you positive energy!

O. My. Goodness. Are you kidding me or what!! Can you say moron? There’s no way I would go back to that doctor. A colonoscopy is a good idea, though. But Get. Someone. Else. Seriously. RUN away from this guy.

I recently gave up my “community physician” and started going to a GI at a prestigious medical (teaching) center where I live. Not only did the new doctor develop his own diagnosis with a thorough exam and several tests (some of which had never been done before), he sort of indicated that the old “community doctor” had dropped the ball, so to speak. I know it’s a hassle, but shop around. And start now because you’ll probably have to wait a good 8 weeks before you can get into see anyone.

And get Osmoprep for the colonoscopy. Google it. It’s much better.
-Karen F.

Wow, that sounds a little stressful! My uncle has colitis and he’s run a few marathons. I’ve also been tested for both Chron’s and Colitis. Good times indeed! Turns out I don’t have either, but I empathize! Hope you feel better soon.

Are you still selling any of those shirts?! Or did I miss the train?! I’ve been Googling the shiz out of “I [heart] sweat t-shirts” ’cause I want one SOOOOOO bad!!

In your doctor’s defense, he probably sees a gazillion patients, and sometimes when you see so many people everyday day, they all sort of merge together. I have to ask people questions to make sure I’m thinking of the right case sometimes, even if I’ve reviewed the charts. Buuuuuuuut, my jaw dropped when I read that he thought you had UC 3 years ago… And didn’t say anything. Definitely get a second opinion! And check out the “Rate My Doctor” website. Some physicians aren’t so good with chronic conditions of the bowels… My doctor refused to believe I had Celiac until I showed her the results of an elimination diet I did with a naturopath and begged her to do the blood work. Turns out, I’m not the only one that had happened to! Good luck! PS – I love your blog, and this is my first time commenting.

Doctors can be so frustrating. You definitely deserve one who treats you with respect and genuinely wants to help you. Here’s to hoping you desk better from this flare up quickly and start getting some answers! Ps modern family helps make everything better, at least happiness-wise

Dude. Naturopath. I’m telling you- regular doctors have no solutions for either one apart from prescription medications that nominally “manage” it, so it doesn’t matter whether they call it crohns or colitis they still can’t fix it! I chucked western medicine altogether and between my naturopath and acupuncturist i’m off all medication and have no symptoms. I know it sounds crazy…just- keep turning over different stones when the same ones get nutty. One internist told me I had *mitochondrial* disease! Big sigh. Too bad Big Expensive Degree doesn’t = right.

That would make me VERY nervous haha oh my.. serious nervous laughter for sure. Get a second opinion, and def vet the doctor.. I mean, this current doctor could be right, but it’s odd that he’s just now bringing this to your attention after what, 4 years you said?? Either way, hooray for pjs all day!

Oh no! Number One I’m soooo jealous I want one of those I love sweat shirts BUT I didn’t find your blog until Meghann from Meals and Miles! I want to wrap one of those shirts around myself and wear it all day everyday because well I sweat like a MAN. oh the luck! Shoot!

Anywho PLEEEASE go get a second opinion (well diff doctor all together)! I did that for my neurologist and ended up going to an epilepsy specialist and it has made all the difference in the world! I’d be careful on all that medication too, pay attention to all of the side effects too, some can be pretty gnarley.

Good luck, LOOOOOVE your blog so so so much even though I’ve only been reading a few weeks!

wtffff with your doctor ! that is ridiculous. there is a HUUUGE difference between crohns and colitis, especially the pathology of it all ! don’t even get me started. you should definitely get a second opinion – that is so rude of him ! feel better soon, ali !

Hi – Long time lurker. This post just made me have the need to comment. I’m so glad you are going to look for another doctor. He is just unacceptable! I hope that you find a doctor who will listen to you and support your running – someone who can work w/ your work/run/life balance and not just prescribe pills. Good luck on finding that great dr. so you can feel better soon. Congrats on the marathon by the way!

Ah I hate when people act that way! It reminds me of my football intramural coach who would tell me after I’d fumbled “next time, just catch the ball” … I seriously just wanted to scream in his face, “UM WOW hadn’t thought of that one?!” I hope that the next doctor you see gives you a more helpful answer!! Feel better!!!

Why do some doctors suck? I’m so glad you’re getting a second opinion! I hope you do find out once and for all what you have. I spent years being told I “might” have endometriosis. When I had exploratory surgery to search for and remove it, it was the happiest day of my life (b/c they found it). Even though it may not change your treatment, knowing your diagnosis is so reassuring and empowering. Hang in there, girl, and get better!

Hey Ali, I’m so sorry you’re having a flare, I just got off of one and tomorrow I’m steroid free again… Flares just suck whether it’s chron’s or uc, I’m one of the ones they can’t tell for sure. Remicaid for everyday and roids for special occasions. I’m so happy you are going to find better care, I hope you get the best gastro ever! You’re right it won’t last forever, but it can be hard to stay positive when you’re in pain. You inspire and encourage me on a daily basis and so I hope it’s encouraging knowing I’m pulling for you. Stay strong, you’ll make it through this one, too. Much love and mad props, Sheila

Wow. This makes me sad on so many levels. First, because my old UC doctor knew me so well that he actually sat with my family during my surgery, and my surgeon knew me so well he called me at home to talk shit on my favorite college football team.

But more sad about all the confusion. Yes. PLEASE. Change docs ASAP. If it IS colitis, at least you can have the surgery some day as a cure???? And you have my epistle to refer to, haha.

Were the pills colozal? Email me if you need anything – seriously. I’m not just saying that!

Ugh… I don’t know there is much else to say than Ugh…
I hope that you’re able to find a new GI that you love and who understands your lifestyle and can put together a treatment plan that will work with your lifestyle. It took me a long time to find one that I really liked and trusted but it was totally worth it. In the meantime… sending lots of virtual hugs and rest your way.

That sounds terrible. Doctors are so frustrating. Last year one told me that I’d never be able to run more than 5 miles (I’m running a half marathon on Saturday, so that’ll show him). But your experience sounds terrible. Considering how much you need to trust and depend on your doctor, it seems so irresponsible and insensitive for him to not even think about the way he treats you and keeps you informed.
Hang in there and stay strong! You are definitely know yourself better than any doctor and are stronger than any disease.

Yay for the “Sweat” shirts coming in the mail!!!! I wear mostly purple and pinks, so I’m looking forward to getting the new colors.
Sorry that your doctor sucks. How do you go to him for treatment for three years and he doesn’t tell you he has a different diagnosis for your chronic condition?! I feel like he had the impression that the details were too much for your female mind — “don’t worry your pretty little head with the details.” WTF. You should get a new doctor. One that believes in clear communication with his/her patient.
What’s the difference between Crohn’s and colitis? I don’t like the sound of “ulcerative.”
Feel better.

Wow, can’t believe he didn’t even read your chart or, really, remember you! My boyfriend is a nurse practitioner and he sees this often with doctors he does not work with (the ones in his practice are actually very good, thankfully!), and it’s careless and makes you feel like a number and not a person. While of course Crohn’s and Colitis are similar, you’d think he would tell you that THEN and not now, randomly, when you come in. I hope the endoscopy shows you something new that helps. Hang in there.

Steroids are funny. The last time I got them (for an MS flare up) I had to have two pregnancy tests and got a letter from my doctor explaining the high dose was on purpose…. Some Doctors are just like that… I have had my fair share as well… A second opinion and some research will help calm your nerves but it does add some unneeded stress… and isn’t that what you are trying to avoid… Stupid diseases… Love the positive attitude
Hope you feel better soon.

So insane…I’m in the midst of a colitis flare but have wondered if it was Crohns and have heard of other’s being in limbo between the two also. I’ve had my share of horror stories – it always blows my mind when they say “what are you taking again?” or even say the wrong medication. What?! How long have I been seeing you?? But I agree – you need a new doc. We deal with enough crap (hah) as is with IBD, and you deserve to feel comfortable during the hardest times. Best of luck. I’m a new follower to your blog and can’t wait to keep reading…let’s both beat these flares!
By the way, will the Sweat shirts ever be on sale again? I guess I missed out!

That is really inappropriate of your doctor to ‘remind him’ of your case This is the same person you’ve been seeing. Also, he should have requested your pediatric records when you first saw him. I’m flabbergasted that he just started treating you based on what you told him. I realize that info in a post is shortened and maybe there was more to it. But anytime a patient comes in with a diagnosis a physician HAS to request previous medical records just to confirm before they start treating. There is a lot of overlap between UC and Crohns. The final diagnosis is always made in combination with how the patient feels, what the gastro saw in the colonoscopy and what the pathologist saw microscopically. I have been at the pathologist’s end and I’ve seen many extremely competent GI pathologists struggle with whether it’s Crohns or UC.
Regardless, I hope you get some answers soon. Feel better, Ali! Sending some good vibes your way.